Parkinson's Symptoms and Caregiver Affiliate Stigma: A Multinational Study.

BACKGROUND AND OBJECTIVE: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson's disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer's disease are discussed. METHODS: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demographic information. RESULTS: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US. CONCLUSION: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD remain a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues.

Structural Equation Modeling of Parkinson's Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective.

Only scant literature has focused on social support in Parkinson's disease (PD) caregivers, and no studies to date have examined resilience in this population, despite both variables having been shown to be important in other caregiving populations. As a result, the purpose of the current study was to construct and validate a theoretical structural equation model whereby social support is associated with higher levels of resilience in PD caregivers and increased resilience is related to decreased mental health symptoms. Two hundred fifty three PD caregivers from two clinics in the United States and Mexico completed self-report measures of these constructs. Results suggested that the hypothesized pattern was robustly supported with the structural equation model showing generally good fit indices. Higher levels of social support were associated with increased resilience, which in turn was associated with reduced mental health symptoms. Resilience partially mediated social support's effect on mitigating mental health symptoms. The model explained 11% of the variance in resilience and 35% in mental health symptoms. These findings have implications for future research on the development and tailoring of interventions to improve social support, resilience, and mental health in PD caregivers.

Parkinson's family needs and caregiver mental health: A cross-cultural comparison between Mexico and the United States.

BACKGROUND/OBJECTIVE: Given the growing population of individuals with Parkinson's disease (PD) worldwide and the growing need for family members to take on a caregiving role, it is critical that cross-cultural differences be examined in order to better meet the needs of PD caregivers. The purpose of this study was to examine the connections between the unmet needs and mental health of PD caregivers differentially in Mexico and the United States. METHODS: In Parkinson's clinics at public, academic medical centers, PD caregivers from Mexico (n = 148) and the United States (n = 105) completed measures of unmet family needs and mental health. RESULTS: Caregivers in the United States had higher unmet needs for emotional support and for a community support network than caregivers in Mexico, although caregivers at the two sites had comparable levels of anxiety and depression. Unmet family needs explained 29.5% of the variance in caregiver anxiety in the United States (p < 0.001) but only 5.7% in Mexico (p = 0.209). Unmet family needs explained 30.4% of the variance in caregiver depression in the United States (p < 0.001) and 14.0% in Mexico (p = 0.001). In the United States, unmet needs for emotional support and for instrumental support uniquely predicted caregiver anxiety and depression, and in Mexico only the unmet need for instrumental support was a unique predictor. CONCLUSIONS: PD caregivers in the United States are at increased risk for poor emotional and community support, and these unmet needs channel directly into caregiver anxiety and depression. In Mexico, where caregivers have stronger emotional and community support, caregivers' unmet need for instrumental support generates anxiety and depression. Important targets for PD caregiver interventions may differ between Mexico and the United States.